Trust the tests (16 of them) or the symptoms?
Sep 13, 2010
Dear Dr. Bob: Thank you for your recent reply to my concerns about being HIV + (though I've tested negative on antibody tests and two DNA PCR tests). It has been 21 years since my definite exposure. In the past several years I have been having trouble with fatigue, sweating during the day and at night, and generally being rundown---but I wasn't thinking of the possibility of HIV infection. In May, I developed severe herpes infection on my arm which Valtrex (spell) has not been able to suppress, fatigue, difficulty swallowing, dry mouth, low wbc (fluctuates between 2.3 - 3.8), and recently a CD 4 count of 402 (reference range 490-1740), elevated ACE---and worst of all, persistently extremely painful swollen lymph nodes under my arms and in the groin area (had a CAT scan but no biopsy yet). The hematologist ruled out lymphoma and says he has no idea what I have. I am terrified that I have some rare strain of hiv, because I seemed to have early symptoms when exposed so long ago and now I seem to have about four symptoms from a list of early symptoms of AIDS. I printed out your recent response to me which I use to try to comfort myself, but now with the continuation and worsening of these symptoms and the ACE level, I am terrified. Should I trust the tests or seek more hiv testing for rare strains? I am so scared that I can hardly function.
Response from Dr. Frascino
My assessment and advice have not changed from your August 6th question: "HIV is not your problem. No way. No how. No additional HIV tests are warranted." See below. You need help coping with your anxiety and fears while your doctors complete their evaluation of your symptoms. One thing is absolutely certain: HIV is not the cause!
Is it possible that I am really HIV + 21 years after exposure and 16 tests? Aug 6, 2010
Dear Dr. Bob:
In 1989, I had a real exposure (occupational), and after two weeks or so developed a rash, cold symptoms, dry cough which hung on for 6 months and hives on the palms of my hands (off and on for 1 year). I was tested yearly (always negative), and Still anxious because of the early symptoms, in 1995 I had a PCR for Hiv-1 and an antibody Hiv-2 test and stopped testing until I had a swollen gland in the neck in 2008 (DNA PCR negative, Cd4/Cd8 ratio 1.8). Now this year in May, I developed peripheral neuropathy both feet and hands, swollen glands under arms and slight edema both arms, dry mouth and difficulty swallowing. My Cd4/Cd8 ratio is 3.17, total Cd 4 is low at 402 (reference range 490-1740), %Cd4 = 57% (ref. 30-61) absolute lymphocytes 709 (ref. 850-3900). My wbc is low 3.2, I was discharged from my hematologist who said no lymphoma but "no idea what you have". I had the Abbott Hiv-1/Hiv-2 done, also negative. He does not agree to additional Hiv testing for rare subtypes. Please respond; in addition to being sick with herpes all over my arm, I am terrified and do not know where to turn for help. My life is miserable.
Response from Dr. Frascino
Is it possible that you are really HIV+ 21 years after exposure and 16 negative/undetectable tests? Nope! Not a chance! HIV is not your problem. No way. No how. No additional HIV testing is warranted. You've had way, way, way too many already! Exactly what part of HIV negative are you having difficulty understanding?
Janie, if your life is "miserable," I suggest you seek the help of a mental health professional (psychologist or psychiatrist) to help you accept the truly wonderful reality that you are not HIV infected! For your ongoing medical problems you should see a good internist (internal medicine physician). Remember, HIV is not your problem, OK?
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